How to Talk to your Kids about Alzheimer’s Disease

Are you caring for a loved one with dementia? You don't have to figure this out all on your own. Welcome to Truth, Lies Alzheimer's, the show that helps you reimagine a new relationship with your loved one, a relationship a little more free of stress and anxiety. Join host Lisa Skinner and her 30+ years of experience as she guides you on a new path to a better relationship with those you care for.

Here's Lisa. Welcome back to another brand new episode of The Truth, Lies Alzheimer's Show. I'm Lisa Skinner, your host. And today I want to talk about a very important subject. And this to me is something that all families should take into consideration when they have small children, adolescent children, even teenagers, and they are experiencing a loved one like a grandparent who is living with Alzheimer's disease or related dementia. And the reason why This has become an important topic to me is because in the 30 years that I have been helping families navigate the heartbreaking challenges of living with Alzheimer's disease or related dementia, I have heard over and over and over again, from adult children that when they were little, and I'm talking about, you know, young children to adolescent age to teenage, that they remember having a grandparent who was living with Alzheimer's disease, dementia, and It freaked them out, and they're still carrying this with them into their adulthood because it was such a, a scary or an intimidating experience for them to see a grandparent who was talking about things that didn't make sense and displaying behaviors that they didn't understand. And you know, I can really relate to that because you all know my story dating back 50 years when I went to visit my grandmother and she starts telling me about birds living in her mattress that come out at night and peck her face. And I'm sitting there just flabbergasted that my sweet little grandmother is telling me these preposterous stories. And as it turns out, a lot of adult children that I've talked to in the last 30 years tell me they were kind of traumatized by visiting a grandparent, experiencing their dementia, but nobody ever explained anything to them. Nobody ever gave them a warning about it when they went to visit. They just, the parents just took them there and this was not the grandparent that they were expecting to be visiting. So I thought it would be really important for me to share with you some recommendations and tips and advice on how to talk to your children if you do have a family member who is living with Alzheimer's disease or related dementia., and some of the appropriate and positive ways to approach the subject. But the point being, and I emphasize this strongly, the point being is prepare them for it. It shouldn't come out of left field that, oh, we're going to go visit Grandma at the memory care unit, and they don't even know what a memory care unit is, and you go there and they have no idea that their grandma has Alzheimer's disease, and then they see all these, you know, peculiar things that might, you know, really leave a mark on them. So here are some examples of how you can implement talking to children about Alzheimer's disease. And again, the ages are going to vary, so you need to adapt your approach to be age-appropriate depending on the age of the child. So number one is you want to use age-appropriate language. For a young child, you might say something like, "Grandma's brain is sick, and it makes her forget things sometimes." For an older child, you can adjust that to say, "Alzheimer's is a disease that affects the brain and causes memory loss and confusion." And then you might also use other specific examples like, so because Grandma's brain is sick, she also might talk about things that to you are not going to make sense, but they definitely make sense to her. So just accept what she's saying because it has to do with the changing brain that's happening to her right now, something like that. Number 2, be honest. Grandpa has Alzheimer's disease, which is a condition that affects his memory and his thinking abilities. Explain the basics to them. Use a simple analogy like comparing the brain to a computer that isn't working properly anymore. This might sound a little odd, but you want to emphasize to your children that it's not contagious because kids have wild imaginations, and they know they catch germs when they're at school and places like that. So even though that sounds a little odd and peculiar, just reassure them that Alzheimer's disease is not like a cold or the flu. You cannot catch it from Grandma. By all means, encourage them to ask questions. Here's an example: Do you have any questions about what Alzheimer's disease is or how it's affecting Grandma? And let them just ask you whatever is on their minds. Discuss the changes in behavior that we see with Alzheimer's disease. And you might say something to the effect of, sometimes Grandma may repeat things or get confused. Is it because of her illness and not because she doesn't love us? It's also important to highlight ways that we can support our grandparents or our loved ones by saying something to the effect of, You know, we can help Grandma by being patient, by spending time with her and showing her love and understanding. And then, of course, validate their feelings. It's okay to feel sad or confused about Grandma's illness. I feel that way sometimes too. You can offer your children resources by providing a children's book about Alzheimer's disease or showing them a video that explains the condition in a way that they can understand or relate to. You can seek professional help if needed. If you ever feel overwhelmed or have a lot of questions about Grandma's Alzheimer's disease, we can talk to a counselor together to help us understand and cope with it better. By using these specific examples, you can have a more effective and supportive conversation with children about Alzheimer's disease. And of course, again, remember to adapt your approach based on their age, their understanding, and their emotional needs. Another approach is to use storytelling. Create a simple story or narrative to explain Alzheimer's disease to your children. You can use characters or scenarios that they can relate to in order to make the concept more understandable and relatable. You can involve them in caregiving depending on their age and maturity level. Involve them in simple caregiving tasks for the loved one with Alzheimer's. This can help them feel like they are contributing and also understand the challenges that their loved one may be facing on a day-to-day basis. Have them, you know, interact with them in an activity or something like that. Encourage empathy and compassion. Teach your children about empathy and compassion towards individuals with Alzheimer's. Help them understand that their loved one may actually, may act differently. Due to the disease and that patience and kindness are important when interacting with them. Maintain routines and open communication because children may feel more secure when routines are maintained. Doesn't that sound familiar? We emphasize that people living with Alzheimer's disease, people feel safe and secure in routines and familiarity. And this includes, as the loved one's condition progresses, encourage open communication about any changes or challenges that arise due to Alzheimer's. You can also address misconceptions and stigmas, and believe me, there are a lot of them still circulating around there when it comes to Alzheimer's disease. Discuss any misconceptions or stigmas surrounding Alzheimer's that the child may have picked up from others. Educate them about the facts and help them develop a positive and understanding attitude towards the condition. Provide opportunities for expression. Encourage children to express their feelings through art. Through journaling or other creative outlets. This can help them process their emotions and cope with the changes that come with Alzheimer's disease. And celebrate memories. That's what they're going to take with them the rest of their lives are the memories that they formed when they were younger and their grandparents were healthy. So encourage children to share and celebrate memories of the loved one who's now living with Alzheimer's disease. Reminiscing about happy times can be a positive way to connect with the person and maintain a sense of connection. That's what I carry with me with my grandmother. Yeah, the, the day that I visited her, that you know, rats were invading her home and birds peck at her face. That was not the grandmother I grew up with, and I knew something was wrong. But the memories that I carry with me in my head and my heart are the ones of us baking cookies together and laughing and, and helping her cater her parties and, and doing things like that. And that's the grandma I choose to remember. Keep an eye on how the child is coping with the situation and be prepared to adjust your approach as needed. Children may have ongoing questions or concerns, so be ready to address them as they arise. Especially if you're visiting fairly regularly, because you know that this is a progressive illness and their cognitive abilities will continue to decline. Encourage patience and understanding. Emphasize the importance of patience and understanding when interacting with the loved one with dementia. Explain to the child that their loved one may need extra time or assistance with tasks due to their condition. Be their role model. If they see positive interactions coming from you, it'll help them, um, understand having positive interactions with themselves. Explain to children that changes in behavior such as forgetfulness, repetition, or mood swings are part of Alzheimer's disease. And you can help them understand that these changes are not intentional and that their loved one still cares for them. And try to maintain a sense of normalcy. While Alzheimer's disease can bring changes to family dynamics, Try to maintain a sense of normalcy in the child's daily life as much as possible. Consistency and routine can provide a sense of stability for children during challenging times. And educate them about the progression of the disease. Depending on the age of the child and their understanding of what the disease is doing to their loved one. Provide information about how the disease progresses over time. Help them understand that the loved one's condition may change and their support and love remain important. Encourage open discussions about Alzheimer's disease within your family. Involving other family members in the conversation can positively provide additional support For both the child and the loved one with Alzheimer's. I like to celebrate small victories. Acknowledge and celebrate small achievements or meaningful moments with your loved one who has Alzheimer's disease and encourage children to focus on positive interactions and memories to maintain a sense of connection and joy. So I'm hoping that this will change people's paradigm, start to change people's paradigm about Alzheimer's disease. For decades, nobody talked about it. We all just, our families just wanted to hide their heads in the sand. I think I remember telling you that after that visit that I had with my grandmother, and she told me all these you know, preposterous stories. And I went home and I asked my mother, what's wrong with Grandma? And she said, oh, Grandma's been diagnosed with senile dementia. That's what they called it back then. I said, Mom, I just went to visit her and she's telling me all these outrageous stories. Why didn't you say something? Why didn't you prepare me for it? And her answer to me was, because we don't talk about those things. And I'm telling you this, I'm sharing this with you because I can't tell you how many adult children that I have worked with over the last 3 decades who have told me exactly the same thing. We need to change this and be open about it, pull our heads out of the sands, because I'm hoping in 30 years— I don't know if I'll still be around, but if I am, and I'm helping, still helping families, I want to hear from those adult children how wonderful their experience was visiting their grandparents in spite of their Alzheimer's disease, because our family was very open and honest about it and prepared us for what to expect when we went to visit. I'm hoping we can start to see a lot more of that attitude change with regard to this disease. It's very slow. I have not seen things change that dramatically since the day I visited my grandmother. That was going back about 50 years. I'm starting to see a little bit of progress in that department just since COVID but we're not nearly where we need to be. So that's why I wanted to talk about this with everybody today. Please, please talk to your children about Alzheimer's disease if you do have that happening in your family circle. They'll thank you for it later instead of hearing, "Oh my gosh, I was so traumatized by visiting my grandparent who lived with Alzheimer's disease, and, and I, you know, it just freaked me out. We're so far beyond that stage in our existence. So anyway, I hope this has given you something to think about. And, you know, there are a lot of resources out there to help children better understand this disease. It's not going away. So a lot of us are going to be dealing with this in our, in our family circles and our family dynamics. So anyway, that's what I had planned for you today. I hope this has been really helpful, and I'll be back next week with another brand new episode of the Truth, Lies, and Alzheimer's Show. Again, I'm Lisa Skinner, your host, and I hope you all have a marvelous fantastic week. Hope to see you back here again next week. Bye-bye for now.

Thank you for listening to Truth, Lies Alzheimer's. We hope you found something in today's episode that helps. We understand that caring for a loved one with dementia can be the challenge of a lifetime, but you don't have to do it alone. If you're ready for a exclusive access to even more great content and resources. Head on over to Facebook and join Lisa Skinner's Minding Dementia support group. We're a community of like-minded caregivers, and we're here to help.